The survey was distributed to 55 organisations: 20 (36%) in the Republic of Ireland; 35 (64%) in Northern Ireland. In the Republic of Ireland 13/20 (65%) responded and in Northern Ireland 16/35 (46%) responded. The overall response rate was 29/55 (53%). Of the 29 responding organisations, 16 were from the statutory sector, and 13 were from the non-statutory sector (Table 2). Of the 16 organisations from the statutory sector, 14 were from health and social care, and two were from the education sector. Health and social care organisations included responses from various departments in all five Health and Social Care Trusts throughout Northern Ireland and six hospitals in the Dublin North East Health Service Executive Area in the Republic of Ireland. Organisations from the education sector included a university and a school providing services for young adults with life-limiting conditions making the transition to adult services. Of the 13 organisations in the non-statutory sector, four were hospices and nine were charities/voluntary organisations providing transition support and services to young adults with a range of life-limiting conditions such as cancer and disability services.
Four hundred and two individuals in 55 organisations were invited to participate, and there was a response from 104 participants representing a 26% individual response rate. Of the 104 participants, 31 (30%) were from the Republic of Ireland, and 73 (70%) were from Northern Ireland. This equates to a 19% response rate in the Republic of Ireland and a 31% response rate in Northern Ireland. Nursing and medical staff represented 54% of participants (Table 3). Medical conditions cared for included life-limiting haematological conditions, renal conditions, nephrology, urology, genetic and metabolic conditions, cardiology, neurology and inherited disorders. These medical conditions represented all four categories of the illness trajectory of life-limiting and life-threatening conditions  (Table 1).
From an organisational perspective, 26 of 55 (47%) organisations did not respond. Fourteen of 26 organisations were from non-statutory organisations and included some hospices, and a range of organisations providing condition-specific services for life-limiting conditions which included cancer and neurological conditions. The remaining 12 statutory organisations included disability departments at colleges and universities, general practices/primary care practices and schools.
This section provides responses to a range of questions in the survey questionnaire.
Question: Is there a transition policy and/or strategy in your service?
Participants in 13 of 29 (45%) organisations had at least one participant who reported the availability of a transition policy in the organisation in which they worked (Table 4). Participants in six of 13 (46%) organisations in the Republic of Ireland and seven of 16 (44%) organisations in Northern Ireland had a transition policy. On further analysis, in the Republic of Ireland, three of the six (50%) hospitals reported there was a transition policy available, and in Northern Ireland, at least one participant in four of the five Health and Social Care Trusts (80%) reported there was a policy. Participants in the two organisations in the education sector (100%) reported the existence of a transition policy. Two of the four (50%) hospices had at least one participant who indicated there was a transition policy in the organisation.
Question: Is your service currently developing strategies, policies or processes related to the transition process?
Participants from 18 of 29 (62%) organisations stated they were currently developing transition strategies (Table 4). At least one participant from nine of 13 (69%) organisations in the Republic of Ireland, and nine of 16 (56%) organisations in Northern Ireland, reported they were currently developing transition strategies/policies in their organisation. Most statutory organisations in both countries stated they were developing strategies (88%). In the education sector, both organisations (100%) were developing strategies.
Question: Has there been a formal or informal evaluation of the transition processes in your service?
Participants in six of the 29 (21%) organisations stated an evaluation had been completed (Table 4). When comparing the Republic of Ireland and Northern Ireland, at least one participant in one of 13 (8%) organisations in the Republic of Ireland and in five of 16 (31%) organisations in Northern Ireland reported an evaluation had been completed. No participants in any of the six hospitals in the Republic of Ireland said an evaluation had been undertaken, and at least one participant in two of the five (40%) Health and Social Care Trusts in Northern Ireland reported a transition evaluation had been completed. In the education sector, participants in both organisations (100%) stated an evaluation of transition services had been completed. No participants representing charitable organisations stated an evaluation had been completed, and one of four (25%) hospices reported the completion of an evaluation.
Question: Approach to managing transition
Participants were asked to indicate on a five-point Likert scale how seldom or frequently they used one, or more, of the four models of transition related to Forbes et al.  work outlined in the methods section. The most frequently used model across all organisations in both the Republic of Ireland and Northern Ireland was the direct transition model which emphasises the importance of effective communication between children’s and adult services and interagency collaboration. In the education sector, a university in the Republic of Ireland reported using all four models frequently, and the most frequently used by the school in Northern Ireland was reported to be both the developmental transition model which focuses on active support for the young adults personal growth and development and the professional transition model which describes one key professional who takes responsibility for engaging key stakeholder groups to meet the young adults’ needs in the transition process. In the hospice sector, the professional transition model was the most frequently used.
Question: In relation to your organisation, at what age does the young person usually begin the transition process and formally transfer to adult services?
In the Republic of Ireland, the transition process usually began at age 16 (range 12–19) and in Northern Ireland at age 14 (range 12–18). In both countries, transfer to adult services was usually at age 18, with a range of 16–20 years in the Republic of Ireland and 14–25 years in Northern Ireland (Table 5).
Question: Does your organisation have any young adults who remain in children’s services beyond the age of 25 years?
In the Republic of Ireland 5/13 (38%) and in Northern Ireland 3/16 (19%) organisations reported they had young adults over 25 years who remained in children’s services.
Question: Which of the following categories for illness trajectory do the young people/young adults with life-limiting conditions who are using your service fall into?
In question eight, participants were asked to identify which category of illness trajectory they cared for in the services they provided from the four categories outlined in Table 1. Fourteen participants (13%) identified only one of the four categories—five for category one, four for category two, no responses for category three and five for category four. Thirty-five participants (34%) identified as caring for individuals from all four categories in their service. The remaining participants (53%) identified providing services for individuals from either two or three categories with different permutations, or alternatively, there was no response.
In what follows, information in brackets following the quote relates to the participant’s unique identifier, their role, sector and country.
Question: In your experience, what factors promote a successful transition to adult services in your organisation?
The majority of responses focused on the need for effective communication between children’s and adult services, or communication between service providers, and the young adult and their parents. Other factors included the ongoing availability of services in adult care such as respite care.
When professionals from adult services actively engage in the process with paediatric services. (5, children’s nurse, Health and Social Care Trust, Northern Ireland).
Question: What do you feel are the strengths of the services you provide in relation to the transition process?
Many participants highlighted the longstanding relationships they had with the young adult and their parents. An early commencement to the transition process, communication between children’s and adult services, adopting an interdisciplinary approach and the availability of knowledgeable staff were also highlighted as strengths.
Children are often known to the service for years-trusting relationships with parents and young people have been developed. (31, member of multidisciplinary team, Health and Social Care Trust, Northern Ireland).
Question: What do you feel are the weaknesses of the services you provide in relation to the transition process?
Weaknesses included the loss of services when the young adult transfers to adult care such as respite provision, challenges identifying a relevant adult service and a lack of staff with condition-specific knowledge in adult services.
No appropriate respite facilities. Lack of knowledge and experienced staff. (53, manager, Hospice, Northern Ireland).
Some service providers stated that a proportion of parents were reluctant to step aside to facilitate the development of the young adults’ autonomy. There were also concerns about how the young adult would increasingly self-manage their medical condition.
‘Parents’ reluctance to let children take over responsibility for their own health.’ (57, nurse specialist, Hospital, Republic of Ireland).
Concerns about young people taking responsibility for managing their condition. (89, manager, non-statutory organisation, Northern Ireland).
Question: What larger changes in transition services would you like to see?
Larger changes included children’s services becoming more active in promoting the young adults’ autonomy by being less paternalistic, availability of respite provision in adult services and a more regional approach to transition.
A regional approach to include [the] multidisciplinary team and nursing. (78, physiotherapist, Health and Social Care Trust, Northern Ireland).